Home Forums Melanoma Diagnosis: Stage IV Update from Melanoma Mom!

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  • #20855
    Catherine Poole
    Keymaster

    December 14, 2012

    Posted: 14 Dec 2012 11:59 AM PST

    A good friend of mine just brought it to my attention that the blog has “suffered six months of silence.” I apologize because I have not been looking at it this way. Let me assure you that during these six-months of blog silence, every day has been filled with the wonderful, amazing, incredibly loud singing of normal everyday life. And to be finally consumed again by everyday life is the exact luxury for which we fought and cried and screamed our way through melanoma’s song-stifling encapsulation. There has been no suffering in my silence. There has been only living. Sweet, glorious, exhilaratingly mundane living. And there has never been anything in the world for which I am more thankful.

    The news continues to be miraculous. I am down to one tiny, subcutaneous tumor on my back. A few months ago, we realized a new tumor in my arm, which resulted in full scans including a PET scan. While the tumor did prove to be melanoma, the PET scan showed that this tumor and the tiny one in my back were the only cancer I had left. This means that all of the shrinking remnants we had been following have been confirmed not to be cancer anymore. I went from more than 30 tumors, including those in my liver and pancreas, down to two tiny, harmless subcutaneous tumors. They removed the tumor in my arm, because they have not been monitoring my arms and legs and have no way of knowing if it was a new tumor or something that has been there all along. So now there is one. One little hanger on to remind us of the lessons we’ve learned and to keep us grounded. I don’t mind this tiny passenger. A lot of beauty was revealed through the horror and there is a part of me that is not yet ready to fully let go. I will take you with me for the ride, but hang on if you’re coming because while I may turn to you for guidance, I will never let you slow me down.

    The transition from patient to survivor is difficult to describe. The all-encompassing, life-consuming, soul-wringing intensity that you live with every single day, not only takes an extreme emotional toll, but also translates physically into the equivalent of a long-term sustained adrenaline rush. Your body is in “fight” mode 24 hours a day, 7 days a week, for months and even years. When you receive the amazing news that this part is over, while it is absolutely fabulous news, it doesn’t work like a switch to turn off your body’s stress response. There is a purgatory between being told you are a survivor and getting to be a survivor. There is a time when your mind and body are working to “normalize” out of this constant intensity and regain their footing outside the boundaries of cancer’s realm. I had a constant, unrelenting need to focus my adrenaline somewhere. And this was paired with a constant, unrelenting frustration in not having a focus. And this combination was then paired with a constant crushing guilt that I was not grateful enough for this miracle. But, thankfully, time marches on and during this march the deafening clamor of the full performance band quieted to a gentle rhythm and I have begun to dance with freedom once again.

    So for these past six months, I have been being patient with myself; letting my mind and my body unwind the knots that were intricately woven during the past two years. I have been reintroduced to “normal” life and I have found the steady beat of being a wife and a mother, working full time, raising a toddler, enjoying my husband, reviling in my friendships, and rediscovering who I used to be. This reintroduction is an undefined process with no completion date. But at least I am at the point where I am okay with that. I am at the point where I can just be. And the way I be, is thankful. Thankful for my every-day cares and concerns, and thankful for my every day.

    We told Kai about Santa Claus a few weeks ago and it has consumed his every fiber. He wants to read Christmas books every night and talk about Santa and Christmas and trees and decorations all the time. He is in love with the Christmas magic and it is wondrous to behold. There was a time when I was sure that I would never tell my kids about Santa because I felt it was a lie. But if this experience has taught me anything it is that we all need some magic to hold onto in our lives. And my mission in life is to fill Kai’s world with as much magic as possible, to build a foundation of wonder and belief, so that if he ever needs it, he will always have a full stockpile of hope to tap into. We have taken him to see Santa in person twice already, and since he’s only 2, multiple Santas just mean more Santa fun. Both times he told Santa that he wants cars, trucks, and trains. And, of course, Santa will bring him cars, trucks, and trains. Last year, all I wanted was to be here to celebrate this year. And, just like he will for Kai, Santa delivered. Santa, in the form of science, dedication, and love, worked his magic to save my life. In this world of chaos, of constant consuming, of crisis, of complexity, of condemnation, there is a fundamental need to believe in magic. Sometimes, just sometimes, when you let your mind relax, put a smile upon your face, and relinquish control, you can see Santa off in the distance with a twinkle in his eye. And in this second, when your true desires are clear, you can be confident that you will get everything you want that year. May we all get everything we want this year.

    Today I am thankful for magic. I am thankful that I am here to see Kai’s first exposure to Santa; I am thankful for our upcoming trip to New Mexico, which will be our first time there in three years; I am thankful for the holiday season of magic; I am thankful for all of our fabulous friends and family; and, as always, I am thankful for my sweet sweet Jeff, the very best husband in the world, and for our wondrous baby Kai. Of all the magic I have ever seen, you are by far the most awesome of all.

    #58060
    Shirley Z
    Participant

    I absolutely loved reading your beautiful post. So happy to hear you are doing well. Hold your babies close. Our hearts are all breaking for the families in CT enduring this unthinkable loss.

    It was good to come here and see some happy news.

    Shirley Z

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